Educate Yourself
Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
Sole Searching
Finding shoes to fit your needs AND your personality by Beth Deloria, Allard (content sponsor) Did you know that shoes can be used to guess someone’s traits or characteristics? A 2012 study showed that 90 percent of a person’s personality is reflected in their choice of footwear. For those of us needing custom orthotics and…
The community’s role in accelerating therapies
In our webinar on “Accelerating Therapy Development: The Patient Community Role,” Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics, discusses the many ways in which your efforts, as individuals and family members living with FSHD, have paved…
Upcoming Events
Nov
19
Webinar – The Utah FSHD Study
Russell Butterfield, MD PhD November 19th, 2020: 1:00PM ET This month's webinar shines a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended...
Find out more »Dec
17
Webinar – Bracing for spine and knee issues
Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the...
Find out more »
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by FSH Muscular Dystrophy (FSHD).